Tuesday, January 17, 2006

1/17/2006 update on Jenelle

First of all, I have wonderful news - As you can see below, it appears that Jenelle has reached a new milestone! While she is not "sitting up" in the way you would normally picture in your mind, she is lying on her side with her head up for about 5 minutes or more! If you were to casually look at her, you'd think she was just lying on the floor reading a magazine or watching TV. Her head control has been just amazing and I think she enjoys being upright in this position.

We had a little accident involving this last night though...Jenelle was lying in the hallway sitting up like this near the telephone. Big Brother Jack decided he wanted to use the phone to call Grandma and unfortunately the phone slipped out of his hand and hit Jenelle square on the head. For almost half a minute, Jenelle appeared to not even be phased by the flying phone, but then her brain caught up and she screamed and cried as you can imagine. After a few hugs and kisses from Mommy and Big Brother she was fine. The delay in response was hysterical as we all watched it happen and sort of held our breath to see if she was actually hurt. It is good that she shows these normal responses, even if they are a bit delayed.

Tuesday of last week we saw Jenelle's Kidney Doctor. Again Dr. Ben-Ezer was thrilled to see Jenelle and felt she was doing really well overall on the bi-carb supplement. Jenelle was much more animated for her this visit and gave her a few laughs and giggles. Dr. Ben-Ezer ordered some blood work to test Jenelle's bi-carb level and as of this update I have not received the results. Unless I hear from her, everything will remain the same prescription wise for her bi-carb supplement and we'll see the Kidney Doctor again in May.

Yesterday we saw Jenelle's GI Doctor and Jenelle is also doing well in that area. Jenelle's weight gain has been wonderful, but unfortunately this kid keeps growing in height! She is weighing 27 1/2 pounds, which is a pound and a half gain since last September, but she has also grown an inch and a half as well and is now 37 1/2 inches long! She was just barely 33 inches last January, so she has had quite a growth spurt. This puts her at the 15th percentile for weight, and 50th percentile for height. If you recall, Jenelle was actually "under" the chart for weight just last June, so she has come a long way.

Dr. Idries is going to keep her calories the same with her formula, but is encouraging us to try to feed her food by mouth again. If we let Jenelle go too long, she may permanently lose her eating skills and will remain dependant on liquid formula for life. I have noticed Jenelle has been taking an interest in our food sometimes, especially when she smells French fries. We are going to need to re-schedule her formula feedings so she will get hungry during the day when it is time to eat by mouth. Hopefully her school will also help with this as they have a lot of experience getting kids off G-Tubes. I think we may still keep the G-tube site for administering medications as it seems she is doing better seizure wise because she is getting an accurate dose of meds, and it comes in handy for keeping her hydrated when she is ill. We shall see.

That is all for now! Thank you for the continued prayers and support - I'll keep you posted!

2 comments:

crabcake said...

Kelly,

You'll have my prayers. :)

She is absolutely adorable.

If you ever want me to link you on my site to help get the word out to people about Gastaut Syndrome, just let me know.

This is the first I've heard of it myself.

You are a strong,loving, lady. I have a feeling little Janelle has inherited your spunk.

It's a pleasure to meet both of you.

Emeriol said...

Kelly,
I hope Jenelle continues to do better. Your website is great and informative... Best of luck to you both!
-Scott